Off to Repair a Broken Heart

On the morning of September 13th, I handed my 3.5 month old daughter over to a nurse. The nurse held her in his arms and promised to take care of her. He walked out of the room with her on his shoulder and she was gone.

Pre-op testing day.

Off to repair a broken heart.

Our daughter, Evelyn, was born with a complete atrioventricular (AV) canal defect. One of over 70 different types of congenital heart defects (CHD). CHD’s are the most common type of heart defect, affecting 40,000 live births each year in the United States. The reasons for the defects are largely unknown, with only a small percentage explained by genetic components.

It was a nurse.

Anxious in the waiting room with our family surrounding my husband and I, it was a nurse who called with updates throughout her open-heart surgery. It was a nurse who called to say there were complications with the surgery and that they would need to put Evelyn back on bypass. Running out of breast pumping supplies because the surgery was longer than anticipated, it was a nurse who brought me a bag full of extra bottles and labels. Hours later, when we were finally able to see our daughter, a nurse who explained her condition to us.

We settled into her room in the cardiac intensive care unit (CICU). It was a bright and cold room. Our daughter was covered with tubes and lines and a fresh scar lined her previously unmarred chest. The night nurse came in and put a bow on her head and socks on her feet. Donations, she said, from families who had taken this journey before us. Many of whom entered with their child, but did not get to leave with them.

Post op the night of the 13th wearing the bow the nurse gave her.

Nurses help us through our worst days and celebrate with us on our best.

As nurses, we strive for perfection. We follow protocols put in place by those before us to keep errors at a minimum.

I am a nurse.

We strive for perfection, because anything less is what happened to my daughter. Anything less causes harm to a body that is already struggling to survive. On the Friday after my daughter’s surgery, a nurse was in charge of my daughter’s care. The mistakes made that day would lead us to spend an extra six days in the hospital while my daughter recovered.

Every mistake made was preventable.

If a nurse had used the most basic of instruments, the stethoscope, and listened to her lungs when they came onto their shift, they would have realized there were no breath sounds on the left side. Friday morning, Evie had a portable chest x-ray. It showed her left lung was collapsed. Her endotracheal tube was not midline and was in the right branch of her lung. It would take days of rigorous therapy to re-inflate her lung and be able to take her off of breathing support.

The rigorous therapy terrified my daughter. Her heart rate was up over 200 beats per minute and her blood pressure skyrocketed. To help keep her calm before her next treatment, Ativan was ordered. The nurse, did not scan the medication into the system before dosing her. In scanning, the nurse would have realized he was giving her twice the ordered amount.

We requested a new nurse and were denied. We had to continue receiving care from a nurse who had made 2 errors before 10am.

She was producing good amounts of urine and catheter removal was ordered. After 4 hours of no urine I asked if we should use a bladder scanner to see if she was retaining urine. The nurse told me they did not do that until after 6 hours in pediatrics. After 6 hours, I asked again and was told we would wait a little longer. I made several more requests to bladder scan before, at 10 hours post urinary catheter removal, the nurse relented and said he would bladder scan. Another nurse came in and showed him how to scan.

There is no shame in not knowing how to do a task.

Nurses show each other how to do new things all the time. The shame is allowing a patient to suffer because you are afraid of how it will make you look if you don’t know how to perform a task. If the nurse had bladder scanned earlier in the day, he would have found my daughter was not producing urine. She had suffered a kidney injury during surgery. Kidney injuries should be treated quickly and aggressively. Her kidneys did not function properly for days afterwards and she required a slow medication drip to keep them functioning.

That evening, the nurse gave report in hushed tones. I asked what they were whispering about and he said that there was a “spot” on my daughter’s head. Earlier in the day I had stated I did not believe she was being turned properly, but I could not turn her because I was unfamiliar with turning a patient on a ventilator. The nurse assured me she was being turned properly.

My daughter developed a pressure sore on the back of her head. They would not classify it as an ulcer as it still blanched. The sore was red and white and filled with fluid. Months later, my daughter still does not grow hair in the place where the sore occurred.

3 days post op.

Over the next several days I noticed her arterial line looked red. The nurses assured me it was dried blood underneath the dressing and nothing to worry about. When we were finally able to have the arterial line removed on day 8 of her hospital stay, the red area was a large blister from the arterial line where it had turned a little to the side and was digging into her fragile skin. It took 8 weeks for the blister to heal completely after her surgery.

I reported preventable mistakes.

I reported the issues to the charge nurse and then to nurse management, neither of whom took action. Finally, I reported the issues to patient care services who could not let us know if there was any action or policy changes to keep mistakes from occurring again. There is still no resolution.

As both a parent and a nurse, I researched all the surgeons and hospitals who performed the life-saving surgery my daughter required. I looked at statistics and interviewed surgeons. The surgeon was with my child for 8 life-altering hours. The surgery was a great success.

1 month post-op.

The nurses were with her 24/7.

What I failed to do was ask parents of children at the hospital how the nursing staff treated their children. I would have found families with experiences similar to mine. If I had asked, I would have realized that the hospital we chose used numerous travel nurses, float nurses, and new nurses to address staffing gaps. Every nursing care unit needs nurses who are experienced with the facility and the patient population to guide expert care.

Well-healed scar and a banana face!

Nurses make mistakes.

To err is human. When a nurse accepts their role as caregiver, they also accept the tremendous responsibility of life that comes with being a Registered Nurse.

We have to hold each other accountable.

She’ll get an echo every 3 months until she’s about 2 years old. Then her echos will be spaced out until hopefully she only needs 1 per year.

Nurses in the Pediatric CICU, and nurses in every patient population, spend time with parents during the worst times of their lives. They must be ready to face battle with patients and parents against congenital heart disease. Each new day is a warzone of drug cocktails, ECMO, heart caths, and surgeries to keep our children alive.

To be a pediatric cardiology nurse means fighting heart, body and soul against the impossible